UPDATE (5/25/2012): Due to Kali’s recurring tumor, she needed to do a full year of chemotherapy. Dr. Tannous, stepped “out of the box” as the industry standard is methotrexate uniblastine but instead treated her tumor with Etoposide because he was having great success. Within just a few short weeks we saw shrinkage of her tumor and Kali has been successfully treated for 2 years. Last year Kali was the Kid Captain for the Hawkeye Homecoming Game. We just can’t say enough about UI Children’s Hospital and the treatment we have received for Kali! —Deanna Buchanan, Kali’s Mom
UPDATE (5/2010): After we finished our first round of reconstructive surgeries (2007, 2008), it was concluded that Kali’s tumor was recurring. So, in January of 2009 we started on a “study” (2 medications) which didn’t work, and in August of 2009 officially started chemotherapy. Our oncologist is in Iowa City, but we do labs and chemo treatments through Blank Oncology. We will finish July of this year, and we are having great success. Kali’s tumor is shrinking! —Deanna Buchanan, Kali’s Mom
UPDATE (5/2009): In Sept. 2008, on Kali’s birthday, we went in for another surgical biopsy and found more tumor. Now that it is officially considered “recurring” they have sent us to Blank Children’s in Des Moines for the chemo portion of our treatments. (We will continue to have surgeries at the U of I) Kali’s doses are extremely low, so she is still doing quite well. 3 Weeks ago, we went in for another surgical biopsy/removal at the U of I, as she had yet another mass growing, but upon biopsy, found that it wasn’t a Desmoid tumor, although the doctors think that if we had left it in there, it would have at the least jeopardized her reconstruction to the jaw area, and at the worst, been a Desmoid tumor. Fortunately, because it wasn’t Desmoid, we are able to stay on her current medications for now. More biopsies are probably in our future. If this medication doesn’t work for her, we will have to go to a full chemo.
Right now, we are waiting to hear back from one of her doctors as she is having some difficulty on the only side of her mouth that she can chew on. (the bottom left side of her mouth has NO TEETH). We are waiting to hear what the doctor wants us to do about that.
Kali’s spirits are great, as usual, she continues to amaze and inspire everyone who knows her. But in reality, all of our kids inspire us. They are our hero’s, and even with all the stuff that is going on, we wouldn’t trade them for the world. —Deanna Buchanan, Kali’s Mom
At age 3, Kali’s parents noticed a lump under the left side of her jawbone. Three months later, in December 2006, Kali was diagnosed with Juvenile Desmoid Fibromatosis.
Juvenile Desmoid Fibromatosis is a group of benign soft tissue tumors that were eating away at Kali’s jawbone and in January 2007 the tumor was removed along with a rather large section of jawbone which was replaced with a titanium place. A followup shortly after the first surgery discovered more tumors and more bone was replaced.
A third surgery was performed in March 2007 and surgeons removed the whole section of jawbone, replacing it with rib and hip bone. Looking forward, Kali will be getting braces at age 8 and there will be more reconstructive surgery scheduled as needed. She will eventually get a full set of permanent teeth by age 18.